Janine,

I'm so glad to hear things are falling into place for you and Larry. You are sounding much more calm and in control with each blog entry

(((hugs)))

Janine,

I am going to look through my library of stroke books and see if I can find a list. In the meantime you might want to have a look at The Stroke Network's Caregiver Handbook. It was put together by members several years ago and may have some helpful info for you.

Caregivers Handbook

I am so glad you found a good aide and that you have reached a decision on what to do. It is so hard to know what is right but it sounds like you are both at peace with the idea so that is a good start.

In terms of things you may need. These are things we got in no particular order:

ramps for any steps (even a single step can be a hazard and they sell 1/2 inch to 2 inch attachable ramps;- also measure all of the doorways- we needed to take one of the doors off to make it wheelchair accessible;

wheelchair;

hospital bed

hospital bed sheets- at least two sets

those square bed pads they use on the sheets for accidents- these are necessary to help turn and position Larry on the bed. We found that the cloth ones were much better than the disposable ones that tore under Mom's 105 pounds! You will want at least two.

tv with remote for bedroom;

cd player with remote for bedroom

good quality battery operated baby monitors. Not electric- you want to abe able to carry them with you through the house

battery recharger and rechargeable batteries (truly shocking how many of these you go through if the monitor is on 24 hours)

plastic basins for bed baths

a lot more cheap washcloths than you have or think you will ever need to use- the packages of 12 or 24 are great. You really do need 3-4 for a good bed bath and you are not going to want to do laundry every single day!

hand held shower nozzle for giving showers (make sure it is long enough for you to use)

seat for shower

grab bars for shower and toilet

thing to make the toilet seat taller ( I have no idea what this is called but they have them at any medical supply place)

sippy cups if he has trouble holding cups

straws ( often easier to drink with one than to tip the head back)

pill dispenser ( most aides can take the pills out of the dispenser but are not allowed to take them out of the bottles )

pill cutter if he takes any 1/2 pills

depends and wipes if incontinence is an issue

some kind of a&d or other ointment ( we use Balmex) if incontinence is an issue and to avoid bedsores. Something that is odorless is less humiliating for him.

lotion for dry skin I am not sure why but we use a lot of this

plastic disposable gloves- the aides are trained to wear them whenever they touch the patient ( these and the depends are cheaper to order in bulk online once you figure out what you like);

recliner with hand held remote to operate-- pricy so you may want to wait on that. We have one so my Mom doesn't need to sit in the wheelchair all of the time and she can relax in the living room with family

cushion for the wheelchair if he will spend a fair amount of time in it to avoid bedsores;

roll up table (like they have in the nursing home) to use by the bed or with the wheelchair to keep stuff on;

List of recipes and like/dislikes for the aide to use with Larry- especially if he has difficulty communicating;

several laminated emergency contact number lists -- one by the phone, one in the kitchen, one in larry's room....

a medical history in case of an emergency when you are out- pertinent surgeries, allergies.... We keep one on the fridge and another over the phone.

If the aide does not drive, an ongoing shopping list. and a place to keep it. ( you might also consider ordering groceries via peapod or something like that-- one less errand for you- although you will still end up going to the store a few times a week);

a delivery account with a pharmacy if Larry is on a fair amount of meds and OTC stuff.... It is hard to get to the pharmacy on top of everything else.

placemats to keep the plates from sliding while he is feeding himself if this is an issue

depending on how neat an eater he currently is -- something to keep his clothes clean when he feeds himself. Mom was humilated by bibs ( and who could blame her) so we have a few different aprons that she can wear if we are eating something hard like soup (she had previously lost the use of her right hand, and the stroke affected the left so eating can be frustrating and messy).

a rocker knife so he can cut his own food

a plastic wipeable one month calendar (do you know what I am talking about- you can get them at any staples or office depot and write on them in marker, and than wipe them off for the next month) to put in Larry's room. You can write the doctors appointments, pt dates, any planned visitors.... so he, you and the aide all know what is going to happen-- I think it can be really hard to keep a sense of what day it is when you are pretty much homebound and this helped my Mom a lot. It also helps us keep our schedule straight-- and keeps her involved;

easy to open (and I do mean easy- try doing it with your non-master hand) plastic containers for Larry to keep snacks, treats in. There is nothing that makes you feel more helpless than to want a cough drop in the middle of the night and have to call for it, or to want some dried fruit during the day and to feel that you are bothering someone;

a few things for Larry to keep handy on his bedside tray or wheel chair tray -- that he can use himself- kleenex, chapstick, treats like gorp or sunflower seeds; small photo albums, or pt stuff like putty... The idea is for him to have things handy that he can do on his own. During the day my Mom has her phone, her remote, kleenex, blistex, gorp, juice, her laminated list of phone numbers, her copy of her schedule,her monitor, and a hand strengthener.... At night she gets the remote for her book on CD in case she can't sleep, hard candies, kleenex, the monitor to call for help, and the control to adjust the bed.... This way she has the independance for at least some of the things she knows she will need, and there is a sense of security involved in knowing that she can do these things for herself. You and Larry will figure out what makes sense for him but it is nice to start thinking about having a few things available.

Finally, you might want to fix up a special place for the aide to keep her things that is out of your way and gives her some privacy. A place in the fridge, a place for magazines.... I know she will be working but there swill be a fair amount of down time so it makes sense to try to make her feel at home.

I am surre I am forgetting some stuff and that you won't need all of this but....

GOOD LUCK!

You are all so helpful. There was some great information here - many items that I had not thought of. I did not know, for example, that there was even such a thing as a rocker knife. And the white-board calendar is a great idea, and the washcloths. I am so glad he is coming home, and so scared at the same time! I feel like the more stuff I can do to prepare the better I will feel, and this really helped.

Janine,

I will send you a pm so I am sure you have this info. One of the very best books I have read on caregiving is called "The Comfort of Home for Stroke." Below is a link to the review I wrote in the newsletter in March 2007. At the bottom of the review is a link to Amazon. There you can read what others have to say.

The Comfort of Home